Kings Cross Hospital
Room 1017
Clepington Road
Dundee
DD3 8EA
Telephone 01382 835185
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Subject: FANS MCN Steering Group meeting
File ref: K:\07HealthSupportSer\Specialist&Screening\NMCN&NMDNs\Networks\FamilialArrhythmia\SteeringGroup\Mins\2016-12-07FANS SG & APR Mins0.2
Author: Aneta Gorczynski
Date: 7th December 2016, 13:00, Balgay Room, Kings Cross Hospital, Dundee
Present:Dr Anna Maria Choy / Consultant Cardiologist & FANS Lead Clinician, NHS Tayside
Susanne Christie / BHF Arrhythmia/Cardiac Rehab Nurse Specialist, NHS Tayside
Aneta Gorczynski / Programme Support Officer, NHS National Services Scotland
Joined the meeting via VC:
Dr Rob Ainsworth / Consultant Forensic Pathologist , NHS Lothian
Dr John Dean / Consultant Clinical Geneticist, NHS Grampian
Hazel Hailey / Genetic Counsellor, NHS Grampian
Dr Wayne Lam
Dr Ruth McGowan / Consultant Clinical Geneticist, University of Edinburgh
Consultant Clinical Geneticist, NHS Greater Glasgow & Clyde
Denise Oxnard
Karyn Robertson
Dr Kerryanne Shearer / Genetic Counsellor, NHS Greater Glasgow & Clyde
Senior Programme Manager, NHS National Services Scotland
Consultant Forensic Pathologist, NHS Lothian
Dr John Williams / Consultant Forensic Pathologist, University of Glasgow
In attendance:
Catriona Johnson / Programme Associate Director, National Network Management Service, NHS National Services Scotland
Claire Lawrie / Programme Manager Information Management Service NHS National Services Scotland
Apologies:
Dr Paul Broadhurst
Dr Caroline Coats
Dr Derek Connelly / Consultant Cardiologist, NHS Grampian
SpR in Cardiology and clinical fellow
Consultant Cardiologist, NHS Greater Glasgow & Clyde
Greg Fearn
Audrey McColl / FANS MCN Manager, NHS National Services Scotland
Patient Representative
Dr Karen McLeod / Consultant Paediatrician, NHS Greater Glasgow & Clyde
Dr Catherine McWilliam / Consultant Clinical Geneticist, NHS Tayside
Dr Karen Smith
David Steel / Nurse Consultant, Cardiology, NHS Tayside
Programme Associate Director, National Services Division
Item / Action
1. / Welcome and apologies
Dr Choy welcomed everybody to the meeting and apologies were noted as above.
Dr Choy introduced Mrs Catriona Johnson, Programme Associate Director, National Network Management Service, NHS National Services Scotland and invited her to chair first part of the meeting – the Annual Performance Review for the network.
2. / FANS MCN Annual Performance Review
Introduction
Mrs Johnson started the meeting by explaining the role of NSD as commissioner for national networks and process of annual performance review meetings as an opportunity to review network aims, objectives and set strategic goals for the year ahead. It was also emphasised as an opportunity to highlight any gaps in support from NNMS for the network.
Current SA Position
- It was acknowledged the service agreement for FANS was in place until March 2018 – completed and signed off
- Review process – Mrs Johnson informed the group that every 3-5 years all national networks would go through in depth review in a formal process carried out by an independent review group. It was noted that FANS MCN review was due in November 2017, Ms Karyn Robertson would be providing the Steering Group with a detailed presentation on the review process in due course and assurance was given that the network would be supported throughout the process.
Mrs Johnson invited Dr Choy to provide a brief summary of network key achievements in 2015/16 and challenges going forward.
Service Development:
- Dr Choy explained the service was delivered through regular multidisciplinary team meetings embedded within main centres, improving patient access to services
- The network had developed paediatric pathway and guidelines
- The network successfully organised 7th FANS Symposium together with The Association for Inherited Cardiac Conditions, attended by 100 people
- A number of research projects for inherited cardiac conditions were in the pipeline
- First West of Scotland MDT for paediatric inherited cardiac conditions took place in January 2016 with input from Dr Kaski (Great Ormond Street Hospital in London). Dr McGowan stated that these clinics were well established with positive feedback from the patients/carers.
Dr Lam informed the group that the East of Scotland had plans to introduce similar clinics in Edinburgh initiated by local cardiologists although the details were not yet available Mrs Johnson highlighted the need to ensure there was consistency across all clinics being held under the auspices of FANS
- Links had been established with cardiologists from University of Hong Kong; two clinicians had visited a number of FANS services in September to observe how inherited cardiac conditions were managed in Scotland with a view to adopting a similar approach in Hong Kong
- Servicedevelopment in Forth Valley (a non-specialist centre) included the introduction of nurse led services for ICC patients. Specific funding was in place and protocols had been developed
- FANS organised and delivered its first national public education event in Perth in September 2015. The event was very well received and next one was planned for 6th of May 2017.
- Mrs Johnson raised an issue of information governance around data stored on FANS NCAS system. Mrs Claire Lawrie was welcomed to the meeting as Programme Manager for Information Management Service (IMS) with NHS NSS.
Mrs Johnson concluded this issue was to be discussed at separate meeting and asked Mrs Gorczynski and Mr Fearn to organise a meeting to take this further with IMS and all relevant stakeholders.
Horizon scanning/issues/risks
- It had been reported that The Nursing & Allied Health Professional Subgroup was finding difficult to maintain momentum due to difficulty in non-medical clinicians finding time to engage. Mrs Johnson asked for more detail and asked the group if NNMS can help in any way to support the network in this matter.
Dr Dean suggested that cardiac rehab nurses should be included,However, Mrs Christie explained that this was not feasible as rehabilitation services were set up differently.
Dr Choy highlighted the Miles Frost Fund (under BHF umbrella) that had recently opened to bids from services across UK as a potential source of funding.
Dr McGowan informed the group her bid to provide additional cardiomyopathy nurse time and genetic counsellor posts to widen cascade screening and run nurse led clinic in the West of Scotland, was successful. She informed the group they were to ask for additional funding for 0.5 WTE of nurse time per health board (4 health boards signed the agreement: Greater Glasgow and Clyde, Ayrshire and Arran, Lanarkshire and Dumfries & Galloway). It was noted that within a new bid therewere plans to set up the clinic with teleconference facilities for ease of access for the patients.
Workplan 2016/17
Mrs Johnson referred to the workplan and asked (Objective 02) about difficulties regarding NMHAP engagement and progressing collaborative UK wide education event.
Dr Choy advised it was agreed with Nigel Wheeldon (chair of AICC) at the FANS SYMPOSIUM that AICC could hold 1 of their regional annual education events in Scotland – unfortunately to date no progress was noted.
Objective 03 (“A stakeholder engagement and education event to be held in 2016/17”) – Dr Choy informed that FANS Patient Event was scheduled for 6th May 2017.
Objective 04 (“..Developing physical resources such as the wallet card for the use of drugs for people with Long QT syndrome..”)
Dr Choy informed that the wallet card was at the final stages of completion, ready to be printed.
Objective 06 (“HEARTe education module”) – Dr Choy informed that the inherited cardiac conditions module (as a part of HEARTe suite of cardiac learning tools) wascompletedand launched on 11 November.
Objective 07 (“Build on the exploratory hypertrophic cardiomyopathy mapping work to review provision of services”). Dr Choy informed this work was carried out and completed by Mr Fearn, the report to be available in next Annual Report.
Objective 08 – Paediatric Pathway and Guidelines were signed off and available on FANS website.
Objective 09 – Audit of referrals for genetic testing (including years 2014-15) - it was noted the audit would look whether referrals were geographically distributed as expected and would inform workplan for the following year.
Objective 11 – Mrs Johnson enquired about network governance. She asked whether there were links between NHS Inform and FANS website to ensure there was no duplication of effort. Dr Choy informed that NHS Inform was website accessed by the public/patients and FANS website contained information primarily for clinicians including links to up to date guidelines and pathways.
Dr Choy confirmed that Steering Group membership had been updated and both FANS website and Facebook page were updated on weekly basis. Terms of Reference were recently endorsed by Steering Group.
Mrs Johnson stressed that next year’s Annul Performance Review for the network should be carried out around June 2017. In anticipation of the in depth review in November 2017 Mrs Johnson encouraged FANS to develop a 3-5 year workplan.
Dr Choy confirmed on behalf of the Network that there was a clearongoing need and vision for the network; having concentrated on arrhythmias when it was first established, it now incorporateother inherited cardiac conditions. The services and the way patients with heart conditions were treated hadevolved across Britain, therefore the FANS scope should change as well.
Mrs Johnson closed this part of the meeting by thanking everybody for their input and was happy to answer any questions.
Dr Choy thanked Mrs Johnson for the feedback on the network achievements and guidance regarding upcoming review process. Dr Choy also highlighted she was looking forward to work closely with Mrs Claire Lawrie and IMS team on network data management. / AG/GF
3. / Adoption of the minute from the meeting: 14 September 2016 and action points
The minutes were accepted as correct record of proceedings.
Dr Choy briefly updated the group on action points from the previous meeting that were not on the agenda for discussion and the following were noted:
- Item 2: Heart-e module pertaining to inherited cardiac conditions was launched on the 11th of November. Dr Choy asked Mrs Gorczynski to circulate the link to the Steering Group
- Item 3.1: West of Scotland MDT update: ECG screening & CRY – Dr Choy informed that draft letter was composed and sent to the group for comments. It was noted some members of the group did not receive ittherefore Dr Choy was to circulate it again after the meeting.
- Item 3.4 Tayside MDT: audit of MDT activities across 4 centres: Deferred as both Mr Fearn and Dr McWilliam submitted their apologies.
- 6. FANS Symposium 2016 report was circulated to the group for information. Lessons to be learned and comments taken on board to provide basis for planning Symposium 2017.
- 8. HCM Update – on the agenda.
AMC
Sub group/regional updates:
3.1 / NMHAP Group
Nil noted as Dr Karen Smith submitted her apologies.
3.2 / West of Scotland MDT
Dr McGowan confirmed she would be re-submitting the bid for additional funding for nurses time in 4 health boards. She confirmed was hoping to rollout the clinics April 2017 depending on availability of the new funding from BHF. There was a VC meeting scheduled with key cardiologists to identify the nurses to take on this additional role.
3.3 / East of Scotland MDT
Dr Lam reported that MDT meetings were running as usual. He informed the group that Pauline Pearson,genetic counsellor specialising in ICC, would be retiring in March 2017.Her post advert was published on NHS Scotland website on the day of this meeting.
3.4 / Tayside MDT
Dr Choy stated there was nothing new to report.
3.5 / North of Scotland
Dr John Dean informed the group that extended arrhythmia gene panel was scheduled to launch in January 2017. Dr Choy suggested to Dr Dean to compose an email and inform colleagues in all centres, once the new system was in place.
3.6 / Pathology
Dr Ainsworth reported he was unable to obtain information with regards to procurator fiscals teaching days to raise awareness regarding FANS work, importance of genetic testing etc.
Dr Lam highlighted the importance of good sampling and availability of quality DNA for testing. Extensive discussion took place regarding the local practice of extracting samples, circumstances where the sample was not obtained – depending on individual decision. Dr Dean suggested the variance in practice was evident as there weren’t guidelines available to follow.
It was suggested to look on national level at auditing, over the past year, how many cases haven’t had their tissue sample taken/stored. The group agreed this piece of work would be helpful, Dr Choy suggested Dr Dean, Dr Lam, Dr Ainsworth and Dr Shearer to feedback the progress at the future meeting. / JD/WL/RA/KS
3.7 / Patient Forum
Nil noted as Mr Fearn submitted his apologies.
4. / HCM Update (feedback from the meeting 16/11/16)
Dr Choy updated the group with regards to HCM short life working group established recently to look at HCM services across Scotland. The group met on 2 occasions; at the recent meeting the group agreed guidelines on how patients with hypertrophic cardiomyopathy should be followed up. Dr Dean has kindly drafted and circulated the document – Dr Choy reported that the document was to be re-circulated to ensure the Steering Group had a chance to read it.
There was further discussion with regards to database linking into the wider discussion of database for FANS – to be progressed further with support from Claire Lawrie Information Management Service at NHS NSS. / AG
5. / FANS Registry & Future Information Needs
This agenda item was deferred till the next meeting as Mr Fearn sent his apologies.
6. / 8th FANS Symposium October 2017
Planning of FANS Symposium 2017 was discussed and the following noted:
- Date: 25th October 2017
- Venue: Tayside
- Feedback from the previous event to be looked at to factor in comments into agenda planning
7. / FANS Steering Group Dates for 2017
Proposed meeting schedule for FANS Steering Group was ratified by the group.
Dr Choy highlighted again that FANS MCN review would take place in November 2017 with number of additional meetingsscheduled along the way to support this process.
8. / AOCB
Dr Choy thanked the group for their contribution over the past year and asked to raise awareness amongst colleagues with regards to ICC inviting them to join the steering group if interested.
9. / Dates of future meetings
Wednesday 8March 2017, 12:30, Sidlaw Room, Kings Cross Hospital, Dundee
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